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Your pots history - hope this works this time.  

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Ive spent so long trying to work out what caused my sudden onset of POTS - i had never been a particularly good long-term stander - when i was younger I would get pale and feel super-tired if i stood for too long but i thought this was normal.

When I first moved to this city i developed a whole lot of weird symptoms - weird rashes, itchiness and other strange things.

Then one night I woke up with 170 tachy, fighting to stay conscious and having trouble breathing. I got a major run-around and was treated like I was insane until I found a doctor who was open to researching my symtpoms and we came up with POTS.

I too have blue eyes, pale skin and a celtic background.

I had a cold about four weeks before this onset and I had been exercising very heavily and pushing myself a fair bit. I had also drank two beers that evening

From the onset my body cannot handle caffeine - if i even sip the stuff i freak.

Now days it ebbs and flows and when i get out of town I always feel better after a couple days only to return and get it worse the longer i was away.

One thing that really helped was licorice tea but it gives me migraines - so its a balancing act.

The hardest part for me is how hard it makes normal life - its hard to talk to people when your having trouble focusing and you are concentrating so much on trying to stop yourself from collapsing or zoning out that you cant really concentrate on the person your talking to.

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Mine was due to illness however I have been fainting/sweating/unable to stand occasionally since i was 12. At the time i just got on with it thinkning it was due to heat or being unfit (now i look back i realise how silly that was... especially the unfit idea). Then i got bronchitis when i was 15 and was put on cortisone..it was downhill after that... then i got Epstien Barr (glandular fever) and it was aparantly reoccuring. Then i was bedridden. That was 7 years ago. At first i thought id give myself a WHOLE YEAR to recover... haha .. i was so naive.

I think one day they may find its something really random .. like a spider bite or something like that that causes this type of illness ... something we never really consider. :)

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  • 2 weeks later...

Well I didn't know what to post. I had no previous health issues or concerns. Aug 2004 I had a stomach virus, a very stressful event, and a dose of medication I didn't tolerate well all in the same week. So I went from completey healthy to autonomic neuropathy,gastroparesis,and pots... who knows what triggered it. I still hold the hope that it was the stomach virus because than I think I have a better chance to slowly get to a better place. They say that viral can run it's course with a.n., pots, and gastroparesis so 1year+ later not much difference. Well just have to wait it out. And still who knows what the future holds.

Also I'm not fair complected. I'm sorta olive. Drak brown hair. Hispanic.

Dayna

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Sorry to ruin the connection, but I am 1/4 irish 1/4 dutch 1/4 italian and 1/4 native american indian. I have dark hair and medium skin. No one in my family has every had POTS or any other type of chronic illness. My illness came on suddenly at work when I almost fainted while standing. I haven't been the same since. However, I recently found out that I have lyme disease with 2 co-infections. Hope this helps.

bamagirl

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It was hard for me to answer this poll, but I put what I knew. The only thing is I had a major car wreck in Oct of 2004, and in Feb of 2005 is when I started showing the symptoms. Since I was not seriously injured, the docs dont think that it is the cause of it. My Neuro said that the wreck may have triggered it though. Before the onset of this, I was very active, always on the go. Never sitting still. Had no medical problems for over 20 years. My family was all relatively healthy also.So docs are puzzled. Hope this helps. Vanessa

Hello All,

Based on Denabob's excellent suggestion that we may be able to associate some of the reason behind POTS, I have come up with a small poll. (i am slowly realizing that we are the experts!)

My knowledge is limited when it comes to the certain types of illness that can result in POTS, so I have just listed Illness. reading through the boards as enable me to come up with some of the other suggestions.

SO of S = sudden onset of symptoms ( I felt this should be divided into four categories, as we may find that looking back you discover things that went un-detected, and if so / or if not it is interesting to try and establish a genetic connection.)

Depending how this goes, we should maybe also try to establish connections between skin colour, lots of us seem to be fair skinned. I know my professor has proven a link between hypo-extensive (double jointed ness) and he was looking at a blood fear link.

I have also added in trauma, as i had heard this may also be a contributing factor.

It would also be interesting to try and complete further research into how gender relates to the development of POTS.

these are just ideas... I'm sure we should try and research further into pregancy, and genetics etc... but i thought this would be a start...

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Guest Belinda

It is very hard to answer, although I had a cardiac ablation about 6 years age where they could not figure out why I was having SVT Tachycardia all the time. So I was given blind ablation, then at some point I got put on Paxil because I ws going through some major trauma(abusive husband), for two years I had no problems.

Then about 8 months ago, I was not sleeping well and was having bouts of tach. again.

I was put on about 10 different drugs to try and stave off what I and Drs. thought was anxiety or PTSD.

Things got worse I was getting the most terrible pains in my neck which they said was tension.

And in about july they thought I was having asthma because I was short off breathe.

They put me on prednisone. YUCK! After being weened off over a month, I came down with a cold and felt like I could not walk across the room or lift my head.

It increased and got worse-oh it's just the flu is what they thought.

Was in hospital for a week, and noone could figure out what was wrong with me. Its in your head mind you i ws on like 200mg. of ToprolXl.

So then I went to endocrinolgist thinking it was hormonal. Nope he said I think you have Dysautonomia.

I now am going for testing. After my PCP freaked out after looking this up. So It could have been there to begin with and then just really exacerbated after Prednisone. Belinda P.s. I am med. skin with Irish and Indian in blood, blonde hair brn eyes.

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started getting sick after car reck,had coction,broken ribs

for 3 long years was treated has a syo case.

bp stay low ,pass out alot,tired all the time ,migres,shackes.vision trobloms,gi allmessed up,

had gallblader out,neved is female parts in dec [im scared,dc doc is]

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  • 1 month later...

The Pregnancy topic should have included family history of Dysautonomia but first onset of symptoms started in pregnancy and probably the combination hypotension/syncope.

I should go on to say that I noticed my first symptoms in pregnancy with syncopal periods. But the full onset of POTS didn't occur until after a flu vaccine in 2001. There are other members of my family that also have POTS. So it would be very difficult to sort this one out.

Edited by briarrose
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  • 2 months later...

Hi All,

Isn't it funny how when you need things the most.... they seem to find you!

I have been struggling with something completely un-related to POTS (well maybe it is related in some weird way), and today for no reason I get a notice in my inbox to access the DINET forums as someone has posted me a message. The message was about my poll on "causes", and was sent to me yesterday. I've never received notification before yet people have contacted me via my inbox...

I was desperate when I posted these polls to try and research what was going on in my body, and why I was experiencing all these difficult problems, why was it happening to me.

I had forgotten how much i needed this forum to help me feel better within myself

L

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My symptoms started when I was 7 months pregnant. I thought it was just the pregnancy. Feeling faint and nearly passing out if I was too hot. Now that I think about it, I had a shot about that time to stop contractions.Don't know if that could be related?

Not sure if any family members have it.

I wouldn't say that I have fair skin but I do have sensitve skin. I was born with strawberry blonde hair, but it was a dirty blonde most of my life......now I'm not sure B) I like to color my hair.

I have brown eyes.

Maybe we should think of our Mother and Father?

My Dad was fair, blonde and blue eyed?

My Mom is medium, dark brown/black hair and brown eyes.

It's a thought.

Amber

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  • 3 months later...
Guest dionna

i don't have fair skin. i can tan nicely and easily if i stay out in the sun but since it is so hot i just stay indoors so i am lighter than usual. i have brown/hazel eyes and medium shade of brown hair. so fair skin thing wouldn't fit with me. but i do have some irish in me. my mom is mostly irish so her and my older brother burn easily. i also have native american and other nationalities from abroad in me though. im just a "mutt". :angry:

i do think that this is an interesting poll and i think finding similiarities can really help in the long run on maybe treatment or prevention? i don't know if you could prevent it but maybe someday?! many years down the road of course.

dionna :P

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Mine started suddenly after a long day biking, playing volley ball, having a few drinks, and ending the night biking back home feeling extremely tired, but had to keep biking to get home and started to feel pain in my arm and jaw, lightheaded, short of breath, nausea, but kept on biking because had to get back home. Once home thought I was dying... pain in my arm and jaw, nausea, short of breath, sweating, etc. for about three hours, than finally feel asleep only to wake up about an hour later with my heart racing out of my chest - went to hospital and they said all my tests seemed normal? and that was the beginning of the end of the healthy life I knew.....never been the same since and seem to get worse with each physical or mental stress events.

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Tammy - yours sounds very similar to my first experience - although i was jogging at the time and jsut felt suddenly tired, weak and very dizzy - i had never felt like that before and then i woke up hatnight with the racing heart and then the dizziness on a daily basis began.

Thankfully im doingmuch better with licorice.

As Ive posted before, the baker Institute in Melbourne, Australia is soon publishing a study that found that all the POTS patients studied had a hypermethylated gene promoter on their NET gene. The NET gene is responsible for the protein at the transporst and metabolises norepinephrine throughout the body. They have found that for some reason, our gene promoter has become hypermethylated - whether by exposure to toxins, certain viruses, or who knows what.

That turns the gene off so that we have nearly no net transporter protein and the norepinephrine stays in our system for much longer than usual causing sympathetic overactivity and venous dilation.

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  • 8 months later...

I always suffered with light symptoms at a young age but then at 19 I started experiencing palpatations and anxiety attacks.. Then symptoms just progressed from that point until age 30 when i fell really sick. I felt like I was knocking on deaths door for 4 months. Mine is genetic. My grandmother suffered all her life with symptoms that doctors could not figure out. My sister has occasional palps along with my dad.. I have it the worst by far..

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I had a extensive lower back surgery and an infection in the surgery site,immediately following the surgery I got POTS,although I was not dx for over a year. I have black hair and dark brown eyes but very very fair skin color. P

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  • 2 months later...

This was very interesting, and I loved seeing the results. I am a SO of S with no previous and no history...as far as we know. I don't remember having any illnesses to bring this on and there is no family history. HOWEVER, my mom does have both FMS and CFS, which are in many ways related to POTS. So I wonder if that is connected somehow? Funny, I was always so worried about getting FMS that I never saw the POTS coming!

I do fall in the childbearing age range for women, am fair skinned but dark hair, and have a petite frame.

It's been really interesting reading through this one!

Lauren

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  • 5 months later...

Ok. What about "I think I have had this all my life". I know that I have had it since 15 with no reasons as to why but probably have had it all my life. When I was 2 years old I was in a coma for 4 days near death because of severe dehydration. Maybe that was it. Who knows????

mary

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  • 7 months later...
Age 35 Diagnosed with POTS, SVTs, irregular pulse, and a hypersensative-reaction to adrenaline, tricuspid/mitral regurgitation, hypothyroidism, High DHEA levels, low insulin levels, and cortisol level imbalances

Currently on Synthroid and Atenolol.

Symptoms started in 2000 after over-exertion, than flared in 2005 after a virus and stressful event simultaneously

Tammy, your signature is very much like mine and several others! I'm 33, have POTs, PSVT, very hypersensative reaction to adrenaline: although my catecholamines and metanephrines are LOW normal, my alpha or beta receptors are SUPER SENSITIVE to adrenaline. I can't tollerate beta blockers. I also take levothyroxine for hypothyoidisim. I also have MVP, super high DHEA levels and low cortisol. WHAT THE HECK! I've seen five other people EXACTLY like this. It seems to have something to do with adrenal issues, secondary to taking levothyroixine. Were you taking Snythroid BEFORE this all started back in 2000???

Richard

P.S. I am also fair skinned with red hair green eyes - like the other posters. Strange!

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  • 1 month later...

I choose the sudden onset with no prior history but, I had an episode of some sort of viral sickness during my first pregnancy and it was about 2.5 years after that I was dx. so who knows. Also, I have brown hair, brown/green eyes and fair skin.

JJH

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  • 2 months later...

Interesting post.

the mechanisms of POTS, its often sudden onset and its appearance following pregnancy or viral infection all suggest that it has some sort of autoimmune cause. This is even more likely given its waxing and waning presentation (as do many autoimmune illnesses such as MS, Ankylosing Spond, M.gravis etc.)

It is also interesting that Dr Blair Grubb et al found levels of the same antibodies in 14% of POTS patients tested that are identical to those found in M.gravis - the prognosis and presentation are quite similar although the symptoms are different.

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  • 4 weeks later...

I can say with OVER 100% certainty that repeated trauma caused my POTS. Broken arm, alergic reaction, arm surgery, and the lack of doing anything after the surgery all contributed to me feeling like a zombie less than a month post-op. I'm very sure that my body just couldn't handle the trauma. But that doesn't seem to be the case for most of you...interesting to say the least.

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  • 2 weeks later...

I've had mild transient dysautonomia symptoms all my life, but I had my first documented tachycardia episode 3 weeks after being hit in a bad car accident 2 and 1/2 years ago. I had hip surgeries for cartilage damage and ligament rupture 9 months and 16 months later, and noticed progressive fatigue. I also had mono 3 months prior to the accident but don't remember feeling badly until just after the accident (puts into perspective how we feel all the time when I realize that I feel worse now than when I had mono). I think it just pushed my body over the edge into POTS land. I was 32 at the time of the accident.

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